When her partner, Irene, was diagnosed with early-onset dementia, both her and Rachael lived in denial for nearly a year, until a meeting with her GP brought the truth home. Here, she shares her experiences of caring for her…

How was Irene diagnosed?

Badly! Of course getting the diagnosis is awful, but I felt that our experiences was somewhat insensitive in that we were told by the consultant that Irene had Alzheimer’s and then simply left to leave the hospital with no real opportunity to take in the diagnosis or ask questions. That was April 2004. We were told we would have some follow up support, which turned out simply to be a letter four months later offering us a session with a support worker. Irene turned it down, she didn’t want any more to do with the poor treatment we had had.

Looking back, were there any signs before that she was in the early stage of dementia?

Yes Irene was becoming vague, unable to hold on to things, losing confidence in her ability to cope with life.  This led us to seek help through our GP, who in turn sent Irene to a specialised service which also involved a brain scan. It was the results of this that led to our experience above.

What happened after diagnosis?

Immediately afterwards, Irene dismissed it all as a bad experience. I colluded with her denial that anything serious was happening. Then ten months after the diagnosis four different people told me, within the space of one week, that they thought there was more ‘wrong’ with Irene than mere menopause symptoms, the forgetfulness of getting older, depression or anything else. I went to see my GP and she told me very bluntly that Irene would be ‘in a care home within three or four years’. Although I was stunned, this frankness and honesty was very helpful. We finally knew where we were and we had some certainty.

How did you tell other people and what was their reaction?

Irene still wanted to dismiss the diagnosis and although we talked about her problems coping with daily life, we never actually talked about a dementia diagnosis. I think if we’d had more support at the beginning we might have done things differently and I have wondered since if I did the right thing. But denying that things were really serious suited us both, as it meant we could carry on doing all sorts of things that you wouldn’t perhaps expect someone with Alzheimer’s to do.

Telling close family was hard – Irene was only 57. Of course, most people knew that something was awry so it wasn’t completely out of the blue, but telling Irene’s brother, her closest relative, was particularly upsetting. I told all our family and friends. And because Irene herself wasn’t ‘in’ on the news, I couldn’t discuss with her how to tell people, or what she might want. I’ve been really struck by meeting people recently who are living with dementia and seem adjusted to their diagnosis and are in control of it. Irene never wanted to know – she dealt with it by denial. And I colluded with that.

What were the main challenges you faced and when did they happen?

I’ve learnt that coping with it all doesn’t necessarily get worse as the disease progresses. Some of the early stages were the worst and some later stages were easier. One of the hardest things is second-guessing how things will change – you might put in place something to help, but by the time it all gets sorted out, the needs might have changed. Irene seemed to go through plateaus and then sudden drops. Some of the most heartrending and poignant times were when Irene was still aware of the fact that she was losing who she was, was feeling out of control but could do nothing to get herself back. It still brings me to tears when I think of her saying to me, ‘Help me Rach, I don’t know who I am anymore’, when she was still a vibrant, outwardly healthy woman in the prime of life.

For me the very hardest time was when Irene went into an acute hospital and afterwards it became obvious that she needed specialised care and so would end up not coming home. I react badly when people say ‘how did you decide to put her into care?’ It’s not a decision, and I fought it all the way; it became inevitable and I felt the decision was taken out of my hands. It had to happen – I knew I wasn’t going to give up my job. First, I was only aged 50 and second I needed to earn a living. This was August 2007 and we had managed at home with a rota of paid workers and volunteers, that I organised. I worked four days a week and looked after Irene the rest of the time. I had no real time out for four years.

You can find huge strength if you are looking after the love of your life. Reflecting now, I realise that it might not be so easy if your relationship with your husband/wife/partner is not a good one.

Irene died in 2013 aged 66; we were partners for 33 years.

Did any services make a difference?

Having a dedicated Younger People with Dementia team (in Leeds) made a massive difference and we had a fantastic Community Psychiatric Nurse. We also had a great female consultant, and both she and the CPN would see us at our house.

I found an agency that, free to me, paid a person to sit with Irene two hours one night a week so that I could get to my yoga class. I also found an agency that helped to organise the administration of the payments to the two paid helpers and to sort out insurance, holiday pay etc.

The law about civil partnerships helped a great deal. It meant that I could sum up in two words what our relationship was.

I found a fantastic counsellor for me – expensive but money well spent.

Did any particular products or gadgets make life a bit easier?

Switching our bathroom taps to the kind you find in public toilets helped, as it meant they turned themselves off after a short time. This meant that I didn’t have to get up in the night after Irene had got up to use the loo; she often left the tap running, once with disastrous consequences, as the plug was also in…

Has your experience of living with someone with dementia changed your perception of it?

Yes – I learnt quickly that ‘forgetfulness’ isn’t what it’s about. Dementia is a cognitive impairment and it affects all brain functions, such as the ability to follow a sequence, or to cope with complexity.

I realise that people living with dementia lose their inhibitions, which meant that Irene would strike up conversations with strangers, talk in concerts and so on, this, in turn, makes life nerve-wracking for carers. But it can also bring out talents – Irene took up painting and produced some lovely work, after a lifetime of telling herself she had no artistic talent.

What lessons did you learn and what advice would you pass on to other families?

Dementia takes you to places in your life that you hadn’t expected; it means you can take nothing for granted. It also brings unexpected joys and life lessons. I would rather it hadn’t happened but it did, and I feel very strongly that I want to make the most of my own life and to live for the two of us.

Keep things simple – people with dementia find it hard to make decisions or to cope with lots going on. Don’t make major changes such as changing a room layout or getting a new TV with yet another series of gadgets to understand. But also – live fully. We were cycling in Holland ten days before Irene was admitted to the acute psychiatric ward. She wanted to do things, to travel, and we did.

You need the patience of a saint.

You have to enter the world of the person living with dementia – they can no longer follow yours. So go along with what they say, don’t ‘correct’ them.

Look after yourself – if you go under, you’re not doing your loved one any good whatsoever, so build in support all along the way. Asking for help is a sign of strength not of weakness. Sort yourself out as you go along; work out what’s happening for you emotionally, don’t keep it all in.
You do get though it; nothing lasts forever. And even if you do lose the person who means most to you, you can be happy again, eventually. The sadness will never leave you but happiness and sadness can exist side by side.

Our Dementia Diary: Irene, Alzheimer’s and Me by Rachael Dixey (Medina Publishing) £10.95 is available to buy from Amazon.